About Us

The Churg Strauss Syndrome Association was founded in June, 2004 by two patients, Jane Dion (right) and Dr. Carol Kavanaugh (left). Its original purpose was to gain representation on the Vasculitis Clinical Research Consortium which had recently received more than six million dollars in funding for vasculitis research. Carol and I were invited to attend a meeting of the Rare Disease Clinical Research Network in Rockville, Md. where we were encouraged and supported in our efforts to set up this resource to maintain a presence within the rare disease patient advocacy community.

Because Churg Strauss Syndrome is so rare and because it manifests itself in many ways, diagnosis and treatment can be problematic and confusing. Many of us search the web for pertinent information on the disease and its treatment. This task can feel overwhelming to the newly diagnosed. In addition, there has not been much research on CSS and therefore it remains somewhat of a mystery. Because it affects everyone differently, treatment is not standard. The treatments themselves need to be understood as they can have adverse effects. Some of the articles are written in “ doctor speak” which is hard for the lay person to interpret. We intend for this web site to be a place where patients and their families can easily find the information and support they need to better understand CSS. We also hope that by banding together and establishing a strong presence we might stimulate and support research into our disease.

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Mission Statement

The Churg Strauss Syndrome Association is dedicated to the identification, treatment and cure of Churg Strauss Syndrome. The CSSA is operated and supported by volunteer efforts and is a network of patients, friends, and medical professionals. Our mission is threefold:

1) To offer support and guidance to those afflicted with this rare and little understood disease through patient networking.

2) To provide education and promote public awareness through seminars and workshops, publicity campaigns and literature.

3) To promote and support research to improve treatment and ultimately find a cure for Churg Strauss Syndrome as well as related vasculitic diseases.

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Board Of Directors

Jane Dion
Co-Director
Montgomery, Ma. 413-862-3636.
JD@cssassociation.org

Dr. Carol Kavanaugh
Co-Director
Chico, Ca. 413-862-3636.
Shedokdo@cssassociation.org

Cindy Smoot
Editor of Patient Stories, Research Co-ordinator
Royse City, Tx. 413-862-3636
cindy@dibimail.com

Darlene Koykar
Government Affairs/Public Relations
Woodbridge, Va. 703-492-2534
dkoykar@yahoo.com

Christophe Declerck
Technical Advisor and European Liaison
France
chris_declerck@yahoo.fr

Marian Mesker
International Forum
The Netherlands and Greece
marianmesker@hotmail.com

Naomi Andres
Resource Developer, Surrey,B.C.

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Medical Advisory Board

The Churg Strauss Syndrome Association is grateful for the wisdom and committment of its Medical Advisory Board. The members of our Board are distinguished experts in the field of vasculitis, Churg Strauss Syndrome and related disorders. We are very appreciative of their encouragement and support as we begin this new venture.

Leslie T. Cooper, Jr., MD
Professor of Medicine
Mayo Clinic Medical School
Consultant, Cardiovascular Diseases and Internal Medicine
Mayo Clinic, Rochester, MN 55905

Ronald J.Falk M.D.
Nephrology and Hypertension
University of North Carolina
349 MacNider Building
Campus Box 7155
Chapel Hill NC 27599
919-966-2561
(fax) 919-966-4251

Stephen K. Frankel, MD, FCCP
Assistant Professor of Medicine,
Interstitial Lung Disease Program, Room F-107
National Jewish Medical & Research Center
1400 Jackson Street
Denver, CO 80206
frankels@njc.org
(303)-398-1621
FAX (303) 270-2240

Wolfgang L. Gross M.D., Ph.D.
Medical Director & Chairman, Department of Rheumatology
University of Luebeck & Clinic for Rheumatology, Bad Bramstedt
Ratzeburger Allee 160
Luebeck 23538 Germany
(phone) +49-451-500-2368
(fax) + 49-451-500-365
e-mail: gross@rheuma-zentrum.de

Prof. dr. Loic Guillevin
Department of Internal Medicine
Hospital Cochin
27 rue du Faubourg Saint Jacques
Paris 75014 France
33 158 411321

Priv.-Doz. Dr. med. Bernhard Hellmich
Vice Chairman, Department of Rheumatology
University of Luebeck & Clinic for Rheumatology, Bad Bramstedt
Ratzeburger Allee 160
Luebeck 23538 Germany
(phone) +49-451-500-2368
(fax) + 49-451-500-365
e-mail: bernhard.hellmich@rheuma.uni-luebeck.de

Gary S. Hoffman M.D., M.S.
Harold C. Schott Chair of Rheumatic and Immunologic Diseases
Professor of Medicine
Lerner College of Medicine
Cleveland Clinic Foundation
Cleveland, Ohio 44195
216-445-6996
Fax 216-445-7569

Dr David R W Jayne
MD FRCP
NHS Consultant Physician
Head of Vasculitis & SLE Service
Box 118, Dialysis Centre
Addenbrooke’s Hospital, Hills Road
Cambridge UK CB2 2QQ

Prof. dr. Cees G.M. Kallenberg
Department of Clinical Immunology
University Hospital Groningen,
Hanzeplein 1, 9713 GZ
the Netherlands
+31 50 3612945
c.g.m.kallenberg@int.umcg.nl

Karina Keogh MD.
Division of Pulmonary and Critical Care Medicine
Mayo Clinic
Rochester MN 55905
507-284-2957
(fax) 507-266-0413

Peter A. Merkel, MD, MPH
Associate Professor of Medicine
Section of Rheumatology and the Clinical Epidemiology Unit
Boston University School of Medicine
Director, Vasculitis Clinical Research Consortium
Vasculitis Center, E5
715 Albany Street
Boston, MA 02118
Tel: 617-414-2500
Fax: 617-638-5226
e-mail: pmerkel@bu.edu

Ajay Nirula MD, PhD
Adjunct Assistant Professor of Medicine
Abbott Scholar in Rheumatology Research
Department of Medicine/ Division of Rheumatology
University of California San Francisco
533 Parnassus Avenue, Box 0795
SF, CA 94143-0795
(415)476-4116
Clinic (415)353-2497
Cell (415) 279-2113
Pager (415)719-8821

Ulrich Specks, M.D.
Professor of Medicine
Division of Pulmonary and Critical Care Medicine
Mayo Clinic
200 First Street SW
Rochester, MN 55905
U.S.A
(507) 284-2964 -Medical Secretary
(507) 284-2301-Research Secretary
(507) 284-4521 - FAX
e-mail: specks.ulrich@mayo.edu

John H. Stone, M.D., M.P.H.
Associate Professor of Medicine
Division of Rheumatology
Director, The Johns Hopkins Vasculitis Center
http://vasculitis.med.jhu.edu
Telephone: 410-550-6816
FAX: 410-550-4332

Winston C. Vaughan, MD
Founder and Director
California Sinus Institute and Foundation
1900 University Ave, Suite 101
E. Palo Alto, CA. 94303
650-462-3131
www.calsinus.com


Michael Ephraim Wechsler, M.D.
Brigham and Women's Hospital, Center For Chest Diseases
15 Francis St., PBB Lobby
Boston, MA 02115
Phone: 617-732-8202
Fax: 617-732-7421
e-mail: mwechsler@rics.bwh.harvard.edu

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Special Consultant

Andrew Churg, M.D., Ph.D.
Department of Pathology
University of British Columbia
2211 Wesbrook Mall
Vancouver, BC Canada V6T 2B5
achurg@interchange.ubc.ca

The Churg Strauss Syndrome Association is honored that Dr. Andrew Churg, son of Dr. Jacob Churg, and a distinguished researcher on his own, has agreed to serve as a special consultant to the CSSA. Dr. Churg received his B.A. from Columbia University, NY, and M.D. and Ph.D. from the University of Chicago. He has been on the faculty of the University of British Columbia in Vancouver, BC, for the past 20 years, and is currently Professor of Pathology. His current research interests are related to the effects of environmental and occupational agents on the lung.

Although Dr. Churg is currently engaged in important research pertaining to chronic obstructive lung disease including the roles air polution, asbestos and cigarette smoke play in lung disease , he has always maintained an interest in Churg Strauss Syndrome. He is the author of several studies about Churg Strauss Syndrome and has also written about the history of the disease. We are very appreciative of all his research activities and especially of his support of the CSSA.

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